Duke appointment

[sarah]

Hi everyone, we just got back today. Been at Duke past 3 days. My husbands CBC there is Hemoglobin 7.8, Hematocrit .26,RBC 3.35, Platelets 15, WBC 6. They did a BMB but unable again to get an aspiration. Last month also unable to aspirate. They tried 3 times. He is very sore. Will get results of BMB on Tuesday. Drs at Duke suggested he have his enlarged spleen removed within next 2 weeks. They also stated they would start search for cordblood. Spoke with us about a cordblood transplant. They stated his marrow has become very fibrous. He is very weak and fatigued. Hope he will do well with upcoming surgery. Dr feels once spleen is removed his RBC and platelet count should rise. Any thoughts on this? Dr says the fibrous marrow is indicative of myelofibrosis, which is probally just part of his MDS. I am really confused by all this. Since getting home I have researched this and found something called hyperfibrotic mds. Anyone familiar with this?

[gemloyear]

Hi Sarah, I’m sorry to hear that Charlie isn’t doing well. My husband Glen had the splenectomy done 2 years ago, it did not change anything as far as his counts go. However Charlie is young so hopefully he may fair better. It’s a tough surgery,every precaution was taken before and after. He was given blood tx as well as platelets. the mini cord blood sounds promising.The only person I noticed on the forum who has had that is Doreen.
Glen has been very tired and steadley losing weight the past few months. He was refered to a G.I. doc. Glen was dx with acute colitis, was given carafate and anacol.Suddenly he has much improved, getting his energy back,and also his appetite.We were able to take our trip!
Thank you so much for the referral to Dr. W., what a nice man, we were very happy with him especially since Glen’s CBC was the highest that it’s ever been since his mds dx.We were in on weds. 8/31/. we were impressed with both doc and the facility. Good luck with the surgery,and many thanks once again.
Ellie

[sarah]

Thanks Ellie, so glad you were pleased with our Dr. He mentioned to us about meeting you both. I am glad that worked out. Hope you and Glen had a wonderful trip to NC. which procedure was used to remove his spleen?
Take care,
Sarah

[Terri]

Hi Sarah, This disease is just terrible, I hope the bone marrow comes back with good results. Is Charlie getting tx. I hope the cord blood works out for you both. It is just a hard battle.
Bobs Whites were up last week to 13.8 and he started the Vidaza and usually they get down to the norm range but they only went down to 13.2. Not sure if it is just off because of missing one dose and the day due to the storm. We will wait and see until next cbc in the meantime very worried. Last few times Bobs spleen has been normal but I remember there was a time when his was enlarged. Is Charlie going to get the surgery.

I think of you and CHarlie so often My prayers are with you.

[sarah]

Hi Terri, Charlie is going Tuesday morning for transfusions. Have they suggested cord blood for Bob? Yes, we have appointment with surgeon in two weeks to remove spleen. Hope all goes well with the surgery. I am very nervous about it all. Keeping you both in my thoughts and prayers.
Take care,
Sarah

[gemloyear]

Sarah,He had regular surgery, cut from the breast bone to the navel. they did it that way because many people have several small extra spleens.If any of these extra spleens are left they cause as many problems as the main spleen. that thought alone was scary to me. the doc found 2 more and said that he had gotten all of them. My daughter found a web site that explained the procedure I will ask her tomorrow for the info again. I have it saved on my computer at home but can’t recall the site now.we’re still here in C.Having a family reunion 5 brothers,sisters and families. Glen thinks this will be the last one. Will head back on Sun., a little worried about the gas.
WE pray that everything goes well for Charlie.
Ellie

[sarah]

Drs at Duke also stated in last 3 years since we were there, they are now doing haploidentical hematopoietic stem cell transplant and have made marked improvements. They said if we cannot find cord blood match, our next option would be to do this other procedure with one of our sons who are only a half match. Is anyone familar with this? Neil, please check out my earlier post I had a few questions.

[Suzanne]

Hopkins is doing that too I believe. They mentioned to me when they talked about alternatives that if I got in trouble, they would rather do a transplant from one of my children then an unrelated better match. That probably was almost 2 years ago so i am sure there has been much progress in the success rate since then.

[PAG2005]

Sarah,

My mom has AML and she is in remission. I read the Leukemia and Lymphoma discussion board to keep up with the latest treatments. There is a man on the board that has received a haploidentical stem cell transplant for ALL and he has been in remission for over one year. His wife posts on the board under the userid JGF, and I’m sure she would answer your questions regarding this type of transplant. I believe there are some posts about cord blood transplants too. The website address is http://www.leukemia.org/hm_lls

My prayers are with you and Charlie. Pat

[Terri]

Sarah, Will be thinking and praying as Charlie goes through the surgery.

[shirlsgirl]

Sarah and Charlie,

Thinking of you both…hope you hear some positive news on Tuesday. This disease SUCKS. Hope that the surgery raises Charlie’s counts.

Jody

[sarah]

Thanks everyone for your comments, it is most appreciated. Keep hoping someone can answer my question about the fibrous bone marrow.

[Suzanne]

sarah, Others on the forum have had Myelofibrosis. When I but that in the search button at the top of the page for things in the topics discussed there were over 20 references. See if what has already been said helps you. Try a search of fibrous bone marrow too. Might help you.

[VIOLA]

Hi Sarah! My Dad has MDS 5Q .Last bmb indicated also bone marrow fibrosis.I also found some informations about hyperfibrotic myelodysplasia -bone marrow biopsy shows increased fibres, megakaryocytic hyperplasia and dysplasia. They wrirte that it is difficult diagnosis (myelofibrosis-mds). They also describe case with patients with hiperfibrotic myelodysplasia who responding to treatment with steroids. I also write about treatment Thalidomide+Prednisone, but I don’t know is there some drugs which can to cause the improvement in bone marrow fibrosis???which can slow down this proces???

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